28 Weeks with Tremfya: Still Working? (Injection #5)

March 5th finally arrived–injection day. The time came for the fifth dose of Tremfya (guselkumab) twenty-eight weeks after starting this treatment journey with it in August.

To prepare I carefully laid out the syringe, the instruction booklet, information sheet, a cotton ball, and alcohol wipe on my desk. As I waited for the medication to warm up for a few minutes my thoughts began to wander.

Would I take Tremfya if my insurance didn’t pay for the approximately ten thousand dollars per injection?

Is there any chance for even greater improvement as I go into the second half of a year taking it?

Will any long-term side effects eventually pop up if I take Tremfya over a long period?

As I grabbed the syringe I figured the answers are 1) no–it’s way too expensive, 2) probably not–I’ve probably seen what it can do already, and 3) I hope not–and that scares me to these three questions. I submitted to the fact that I can’t know everything I want to know about taking a new medication even after using it for over half a year.

Thankfully, the needle and medication went under my skin with no issues. Not even a tiny drop of blood emerged as the needle pulled out. Now it’s time to wait to see how effective this injection will be for weeks 28 to 36, and would it follow the pattern I’ve observed with the past couple injections.

The Pattern Continues

In 24 Weeks with Tremfya: A Pattern Emerges I discussed a pattern I observed with the eight week between injections. About two weeks before the next injection my psoriasis worsens. Then two weeks after the injection my psoriasis begins to improve again. I most enjoy the four weeks in between.

During the previous eight weeks I did have a nagging respiratory injection that seemed to worsen both my psoriasis and atopic dermatitis. While it’s possible the break out is due to the lingering effects of infection, I also see it as a potential confirmation of the pattern I described.

This picture I took earlier this week shows how my psoriasis broke out some on my lower back and upper arms. Continue reading →

Tremfya (Guselkumab) Week One

One week ago, I started taking Tremfya (guselkumab) for my psoriasis. The journey to taking that injection started months ago when I talked to my dermatologist about it. I then learned a lot more about its efficacy and safety at the American Academy of Dermatology meeting in Orlando in March.

I’m a bit stunned that I’ve already taken my first dose.

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Follow my Tremfya journey

3 Weeks with Tremfya: The Waiting Game

5 Weeks with Tremfya: Biggest Fear?

6 Weeks with Tremfya: Redefining Expectations

8 Weeks with Tremfya: It’s Working!

10 Weeks with Tremfya: One Step Back

12 Weeks with Tremfya: The Third Injection

14 Weeks with Tremfya: What’s Next?

16 Weeks with Tremfya: The Verdict?

20 Weeks with Tremfya: Read the Instructions! (4th Injection)

24 Weeks with Tremfya: A Pattern Emerges

28 Weeks with Tremfya: Still Working? (Injection #5)

38 Weeks with Tremfya: The Question/Answer Edition

42 Weeks with Tremfya: Coping with a Skin Flare

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Tremfya Approvals

Tremfya received FDA approval in mid-July. I made a drop-in over lunch appointment with my dermatologist to get my prescription two weeks after. He prescribed it to me, but nothing happened for at least a week. I figured insurance held it up again, but turned out the medication hadn’t entered the pharmacy’s computer system.

After another two weeks passed I received a call from the UC Davis Health specialty pharmacy. I couldn’t believe insurance approved my taking Tremfya! They would ship it in a cooler pack on a Friday. I made an appointment the next Monday with the RN at the UC Davis Dermatology clinic to get training before injecting the first dose.

Pharmacist Counseling

I appreciated the pharmacist from the specialty pharmacy going over all the pertinent details and preparing me for what to expect. Tremfya would be my first new biologic for a few years as I settled in with Enbrel (etanercept) even though it wasn’t as effective as I wanted.

First, she told me to continue taking cyclosporine until I saw my dermatologist next. Enbrel I would stop on the Thursday before the first dose.

Tremfya is injected with a pre-filled syringe with about 1 ml of fluid and a small half inch needle for the 100mg dose. I thought it would come with an injection pen like Enbrel, but not so. I have quite a bit experience with syringes from Enbrel pre-injection pen days. The dosing schedule is week zero, week four, then every eight weeks thereafter.

Next, I learned of some the potential side effects of Tremfya, such as headache, upper respiratory infection/colds, and injection site reactions. I felt relieved to know that patients generally tolerated the medication well, with no black box warnings on the insert.

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As scheduled the Tremfya arrived in a box, which was in a box with a cooler in it. My daughter signed for the delivery. The label said that one dose cost $9995. Thank God for insurance, however much I might complain about them.

First Tremfya Dose

As Monday approached the excitement and anxiety for the first injection ramped up. My wife drove me to the dermatology clinic about thirty minutes from home in Sacramento. The appointment coincided with the solar eclipse, which I enjoyed through a hole in cereal box as we drove east.

I couldn’t sit still as we waited for the nurse to call me back. Questions raced through my mind: Would Tremfya work for me? Would I have an adverse reaction to it? Would the needle hurt going in? Would the syringe be difficult to use?

The nurse finally called me to a room where we set up the injection. She had a Tremfya training syringe ready for me to practice first without a needle. In the meantime, we allowed the medication to warm up to room temperature to minimize any pain I might experience from the injection.

Then the nurse taught me how to swirl the alcohol wipe from the inside out. She told me to inject in my thigh, but I felt more comfortable injecting in my stomach. She instructed me to sterilize a larger area so I wouldn’t worry about finding the exact site on my stomach.

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I practiced with an empty Tremfya syringe with no needle before injecting the real thing.

The springs on the syringe felt different than the Enbrel where I needed to pull the medication into the syringe and push out bubbles. I pinched a portion of my stomach then injected it smoothly in.  I pushed down the plunger slowly as she counted down from ten—twice. Once I finished the injection the needle sprung back as the plunger locked in place.

No pain. No blood. Easy. It took less than a minute for that first dose to get in my system just under my skin (subcutaneously).

For the next hour, I sat in the surgical dermatology waiting room as the nurse checked on me every fifteen minutes. I felt some light headedness, headache, and blurry vision—not sure if the medication, the anxiety of the buildup to the injection, or lack of food ultimately caused me to feel that way.

One Week After Taking Tremfya

During the next week, I checked my skin nervously to look for any changes. After some research, and talking to my doctor, I learned that I probably would not see any good response with my psoriasis for at least a few weeks with response rates starting to plateau around ten weeks (though still increasing for some weeks after).

Through more reading, I did learn that the half-life of Tremfya is about 15-18 days, and that the peak concentration would be about 5.5 days. I also found a paper in the New England Journal of Medicine on phase 2 trial data with a chart showing the response rate of those in the trial. The response rate of the phase 3 trials I found soon after looked closely aligned to the phase 2 trials.

During the week, I did feel a bit more tired, and possibly catching a cold with a slight sore throat. But I can’t say for certain it is the medication causing these symptoms. So far, the eczema rashes I fear emerging as they did with a previous biologic haven’t. Knock on wood. The immune system is so complex.

My next injection is in three weeks. I’m looking forward to hopefully sharing good news about my experience with guselkumab.